Lufkin family using national spotlight to educate about 4 year-old's rare disorder

By Morgan Thomas - bio | email

LUFKIN, TX (KTRE) – A.H.O. is a disease experts know little about. Now, the obscure disease, and a Lufkin boy diagnosed with the illness are getting national exposure.

Yet, for the first two years of Carter Hearn's life, no one knew what was wrong.

"At three months he started gaining weight," said Deena Hearn, Carter's mom.

By eight months he was already 30 pounds, but his mom says he wasn't meeting developmental markers like rolling over and sitting up.

"We didn't know is this something that's going to kill him tomorrow or is this something he's going to get over," said Hearn.

Scared and frustrated, Deena knew it wasn't normal, despite no answers from doctors.

A TV special on the Discovery Health Channel changed everything.

"It kind of unnerved me because the name of it was Half Ton Toddler," said Hearn.

The toddler on the show looked just like her toddler.

A specialist in Dallas diagnosed carter with Albright's Hereditary Osteodystrophy - or A.H.O.

"So everything that the para-thyroid would control as far as hormones - calcium, phosphorous, he has to have medication," said Hearn.

The same disorder also caught the attention of ABC News. Nightline producers found the Hearns online.

"Even if its just one family sitting out there not diagnosed or if its one doctor who has a case that they haven't been able to figure out," said Hearn.

All Deena wants is a world that will understand Carter, and treat him just like any other 4-year-old boy.

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